Wanted to reflect on the last week….not the best but showed me the importance of being on stable meds.
From discussion with my doctor (who I respect hugely and who I trust completely) we began the introduction of Levadopa (Stalevo 75 * 3) and the slow withdrawal of Dekinet (I am staying on Sifrol, Azilect and Amantadine).
All was going well until I noticed really major muscle ache and stiffness just about everywhere. My hand, neck, chest locked for moments during this time, My hand (thumb and finger locked at dinner with the family and all we could do was laugh about it). I also had a lot more shaking especially at night.
When thinking about how to define it – the only way I could was to say I felt 20 years older overnight (no offence to people 20 years old than me)…very bizarre
My physio and acupuncturist also noticed. After discussions with my doctor we have decided to stop the reduction of Dekinet and leave it at the reduced level I was at before I had the pains.
As of now I am still tighter than normal (if normal is a word anymore) but starting to feel better and more normal.
Why bother to write this – I sometimes feel I do a disservice by focussing on the ‘less bad’ parts but people also need to know that it genuinely changes minute by minute. I maintain all positivity, optimism with maybe another dose of reality and profound gratefulness to the people that are helping me treat this thing.
Still in the fight!!!!!!!!!!!!!!!!!
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I am a “”new to PD wife”, for lack of any better term, (and most any would certainly be better). We would not be texting for help, except for the fact that my husband and I are, as well, in our early 80s, and we don’t seem to be coping real well with his (diagnosed) disease.
This is partially due to him having been my CG for nearly five years, and we are at a loss as to how to best continue in our current situation. Absolutely any help/suggestions would be so very appreciated.
As well, we are sure there must be others who are “in our boat”, and we just have not yet met them. Thank you.
Hi – and I am sorry to hear about the situation. I am neither a doctor, health care professional or academic so I can’t give advice other than tell my own story but there are lots of people who can help. I don’t know where you live but the chances are there are local support groups – I am sure we can help you find. There are lots of other sites like the Michael J Fox Foundation, Parkinson’s UK etc which offer great advice and there are forums for example the ones on the link here which can help answer your questions (https://fightingparkinsonss.com/links-that-i-have-found-useful/ ). Also this guidebook will help https://www.michaeljfox.org/parkinsons-360 – I am happy to discuss but again I am not a professional